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View Full Version : Do you never go in Remission?



JHJISSICK
09-19-2009, 02:29 PM
Hello,
I posted a newbie post with almost everything wrong with me, and asked if anyone else was this sick with Lupus?? I received no replies except from 1 of the people who run the rooms.

:repost:Maybe I should ask the question more broke down.
-Does anyone else feel sick everyday? Or really never goes into "remission" anymore?
-Is there anyone else here that has to use a wheelchair for distances past walking inside your home with a walker?
-Has anyone else ever been so sick that they have had to be put on a vent to continue living?
-Is anyone else on a pain pump through a central line, or have one intrathecal or in anyway?
-Does anyone else have a list long page of Secondary Autoimmune Diseases?
-Does anyone else struggle with that darn DNR form and wonder why to even bother not signing it anymore?

I could go on and on and on...I feel so all alone.:cry2: I asked the Lupus Foundation of Minnesota for support and they were great, but they were never in contact with someone who had been through as much as I had, so I have never really had anyone to talk to that understands the way I feel. So, maybe if even 1 person who has been through 1 thing would talk to me, that would greatly help. My family and friends are great, but no one understands unless they have been through it themselves. I have so many crazy things that have happened to me (my Doctor jokes that if it's something rare, I'm going to get it, or it's going to happen to me because I don't do anything by textbook) and I haven't even listed those. I was just hoping to maybe find people that have been through the things I listed above.

I hope to hear from someone....Thanks:unsure:

rob
09-19-2009, 03:18 PM
Hey there Jeanette,

I'm sorry you haven't heard from many people yet. I'm Rob, and I'm a moderator here. I have SLE, and MS. Right now there is an odd combination of events that have caused many of our usual members to not be able to post as often as they would like to. Between health, technical, and other problems, things have been a little slow here. It's not usually this way.

I've read your other posts, and I know how you feel. I am sick almost every day. Between Lupus flares, and the nerve related problems I have from MS, good days are rare. I have difficulty walking on some days. I cannot talk of wheelchairs though. My mind won't allow thoughts of that. I will not sit in a wheelchair at 41, or anytime in the near future.

Like you, I have also been dealing with terrible pain. I had a couple of bouts of what was discovered to be Trigeminal Neuralgia, about a month ago I think. I went to the hospital the second time it happened and Demerol barely touched the pain. I have been on Neurontin, and it has helped. I've since learned that T.N. is thought to be one of the most intensely painful things a person can endure. I would have to agree. I was on the floor begging for it to stop, not something I have ever done before.

I haven't experienced some of the things on your list. But, I'm a pretty good listener. I certainly understand how it is with others not understanding. The only people who can truly understand something like Lupus, as well as other autoimmune disorders, are others who have it.

Anyway, things are unusually quiet here right now, but that's not the norm. You are not alone. I hope you get this message, and decide to hang around for awhile. Welcome to our group.

Rob

P.S. To answer your original question, no, I've never even been close to going into remission from either SLE or MS. Maybe someday.

Bonita
09-19-2009, 04:05 PM
This whole summer has been a bad flare and rarely do i have good days. And to top it off the insurance company has denied my rheumotologist the right to give me cell-ceph because they will not cover it. What is this problem and who is the doctor anyway? Hope that you are feeling better soon. Bonita

Angel Oliver
09-19-2009, 06:10 PM
Im sorry i didnt see this post before.First welcome and just watch as members come to post here.

I am so sad to hear what you go through but for me most days are pain and swellings,but some days i do get sme relief depending on how swollen my elbows,knees and ankles are.Then i have jaw problems so talking eating can be a task and a half but not always.I was diagnosed with Lupus at the beginning of the year before blood tests then they took it away from me,so am being tested for it again.Recently i was diagnosed with Fibromyalgia and Sjogrens, i have ibs,Asthma,acide reflux and the bonus ailments of depression n anxiety.

I am sad when you wrote about the DNR and i hope you continue fighting this fight as you are so important to us.I know i do not know you but i hope soon you do get the help,the pain relief.

Many members here have wheelchairs,such pain you carnt bare it anymore like Rob.Wow he has had it so bad and never in a million years thought he'd ever get a break.But you know what he did.Maybe only for a couple of days,but it did come.So always try and keep the hope that one day a good doctor will help ease you life.Just when life hits you hard and you think there is no point......along comes a break.

I am sorry i can not answer your question fully,but hope others members come soon to your side. Just know i care...we all do and will all try and support you. I hope your life gets a little better soon.You so deserve it.I'll be thinking of you and sending good vibes across to you.

Gentle hugs n love
Amanda.xxxxxx

kim,l
09-20-2009, 01:22 AM
hi there i am sorry you are feeling so bad and i am sorry we have not replied welcome to our site i can tell you that i suffer everyday from pain in my hands my feet and depression i have swelling and stomach problems and have trouble with food sometimes choking i am on a walking stick and will now need a walking frame i was in a wheelchair for 5months last year unable to walk and will need wheel chair very shortly i have not had any relief from this since before christmas i have been on oxygen on and off i have to get help dressing now and i need family members to help me with house work i hope they can find the right medication for you to give you relief i know how you feel i have wanted to give up my self lately but because of the support and love i get from my friends on this site it has helped me fight you are not alone we will support you the best we can just remember we all know what this disease does to us it stinks. there a saying live to fight another day and thats what we all have to do. i wish i could be there to give you a hug but just know i am thinking of you. kim l

debbie-b
09-21-2009, 05:09 AM
Hello,
I posted a newbie post with almost everything wrong with me, and asked if anyone else was this sick with Lupus?? I received no replies except from 1 of the people who run the rooms.

:repost:Maybe I should ask the question more broke down.
-Does anyone else feel sick everyday? Or really never goes into "remission" anymore?
-Is there anyone else here that has to use a wheelchair for distances past walking inside your home with a walker?
-Has anyone else ever been so sick that they have had to be put on a vent to continue living?
-Is anyone else on a pain pump through a central line, or have one intrathecal or in anyway?
-Does anyone else have a list long page of Secondary Autoimmune Diseases?
-Does anyone else struggle with that darn DNR form and wonder why to even bother not signing it anymore?

I could go on and on and on...I feel so all alone.:cry2: I asked the Lupus Foundation of Minnesota for support and they were great, but they were never in contact with someone who had been through as much as I had, so I have never really had anyone to talk to that understands the way I feel. So, maybe if even 1 person who has been through 1 thing would talk to me, that would greatly help. My family and friends are great, but no one understands unless they have been through it themselves. I have so many crazy things that have happened to me (my Doctor jokes that if it's something rare, I'm going to get it, or it's going to happen to me because I don't do anything by textbook) and I haven't even listed those. I was just hoping to maybe find people that have been through the things I listed above.

I hope to hear from someone....Thanks:unsure:

Hi there.
The first thing I had to do, is quote you, so that I won't forget your questions, ( bad brain fog).
I am so sorry, that you are feeling that bad.
I myself, haven't had a remission period either. Some days are better than others, but I am in pain pretty much every day. On certain days, I also have a hard time walking and have noticed, that when I push the shopping cart in the store, I walk much better. I was dx with Lupus SLE, RA, Fibro, asthma, possible raynauds and mixed connective tissue disease( still being tested). Lupus is a very hard thing to go through, because it can cause so many symptoms.

Debbie